Flare question

[Psyborg]

So, I could call this my second flare, but really I think it's more like the first as I don't think I was ever really in remission the first time around. My question is do people find the same issues every time or different. It seems like I'm dealing with different stuff this time around. I mean symptoms are very similar, but the ones most intense are not the same. This time around it feels like my head is in a vice constantly with huge amounts of fatigue. Last time it was more joint pain with a ton of dizziness.

I've got an appointment next Wednesday in Cleveland so I'll be seeing the doctor, but this fatigue is really hammering my ability to work this time around. I have about an hour every afternoon where I can't think at all...just fighting not to fall asleep until it passes. Over the weekend I napped during that time, but it's not an option at work I don't think :)

[Sangye]

I don't even know how many flares I've had because I think the Wegs has only been in full remission once. Maybe twice. :confused1:

I have the same general issues but sometimes one is more prominent. Profound fatigue is always one of them. I've heard some people say that each flare has been completely different for them. Anything is possible I guess.

I'm sorry you're feeling so poorly, Bob. Glad you're seeing your CC doc this week. :sad:

[me2]

I"ve only had one flare, its lasted twelve years. I did have points where I thought I was heading toward remission only to slide back again. I've had periods of time where the same symptoms would keep coming back and also I have had wildly different things happen. When the illness first presented for me the most dangerous problem I had was kidneys. It really hammered on them thirty some years ago. I remember the doc kept listening to my lungs and every time I would think "Boy this guy is really a dolt, I've got kidney pain and he listens to my chest" Ha , I was young , there was no internet and doctors did not talk to patients. Doctors now want to talk to patients but they don't have the time but at least we have the internet. I digress.
This time around , the last twelve years, I have had all kinds of serious things go wrong but the illness has not touched my kidneys. Thankfully , they must not be in the greatest of shape.
I know it is not classic medical procedure but in my current dodgy state of ups and downs, I tend to treat new symptoms as wg first (mentally , not with meds) until they prove to be something differnent. Its an odd application of the dictum "When in the forest you hear hoofbeats , think horses, not zebras"
My forest is in Africa and it is full of zebras.
Something odd is more likely to happen to me than something normal.
So, I've longwindedly (not even a word) said that it can come back as the same symptoms or as something different.
Part of what makes this illness so entertaining.

[Psyborg]

On the positive side this time around it's not so freaky, I can generally tell what is from the Wegs. The first time around it was all guesswork. It does make it easier to know when you are having another relapse. I also can say I now remember what degree of badness this feels like lol...I'm 100% sure I was in remission while it lasted a few months.

I guess I had in my head it would go straight for my airways again, wasn't expecting the bigger dose of fatigue instead. The Pred seems to be holding the pain at bay, but everything else seems to be progressing as it did before.

[pberggren1]

I sure hope you're not flaring Bob. But I think you know best. At least you are seeing the CC doc next week. Hang in there buddy.

[Debbie C]

What dr. do u see up there Bob? I see Dr. Hoffman.he's really good and spends alot of time with u. Good luck and I truly hope u start to feel better

[Psyborg]

I'm seeing Dr Villa Forte at CC Debra.

Removing the complainy bits...Prednisone moment I think maybe.

[pberggren1]

You can complain all you want Bob. You have earned it.

[Lightwarrior]

but this fatigue is really hammering my ability to work this time around. I have about an hour every afternoon where I can't think at all...just fighting not to fall asleep until it passes. Over the weekend I napped during that time, but it's not an option at work I don't think :)

If you are getting so fatigued in the afternoon, are you sure that you are not experiencing adrenal insufficiency?? My doc told me that if I get very sleepy in the afternoon, get chilled or a bit confused to take 5 more mg of prednisone. This happened after I nearly went into adrenal crisis.

[Psyborg]

The weird thing is it started when the Pred went up again. I had just reached 0mg, before the pain started up. The doc had me go to 30 mg of Pred and shortly thereafter the afternoon drowsiness returned with a vengeance.

I did have a tooth filled the other day, and that may have been the source of the headaches as it hasn't been as bad the last couple of days.

[Debbie C]

I take my preds in the morn. with my breakfast and I seem to be fine until then. Then I get tired again and need to lay back down for about another hour. These are some strange meds.Damned if u do and damned if u don't !!

[Trudy]

I take my preds in the morn. with my breakfast and I seem to be fine until then. Then I get tired again and need to lay back down for about another hour. These are some strange meds.Damned if u do and damned if u don't !!

I do the same with the same result. I have tried to push through that tiredness and then it as if I never took the pred at all. Now I plan on an hour rest after breakfast and my pred lasts till at least dinner.

[Al]

I take my preds in the morn. with my breakfast and I seem to be fine until then. Then I get tired again and need to lay back down for about another hour. These are some strange meds.Damned if u do and damned if u don't !!Bob, this reminds me of the Gary Larson cartoon, where the guy is contemplating two doors. a demon with horns is prodding him with a pitchfork, saying: "C'mon, buddy, make your choice. It really doesn't matter anyway." The way I put it is, "you can't win, you can't win, and they won't let you quit the game.

For me, mornings are often the worst. Often I have to go back to bed after breakfast. Then, in the afternoon, I start to perk up. By 8:00 at night or so, I am usually feeling pretty good, and getting better.

Good luck getting it sorted out!

Al